Grace is 7 today, Happy Birthday!
Love and Hugs from Everyone.
Why don’t you buy Grace a Birthday present? Please consider a donation…..
Donate at the International Rett Syndrome Foundation’s website (select Race for Grace RI as the Program Area)
or
Send check to (pay “Race for Grace”)
Race for Grace
34 Old Pine Road
Narragansett, RI 02882
Dear Grace Fans,
Fr. Taillon, pastor of St. Thomas More will be leading the candle-lit Rosary for Grace on Friday May 27th at 8pm at St. Veronica Chapel parking lot (home of Race for Grace) on Boston Neck Road in Narragansett.
Please come and share a short evening of Rosary and song for Grace and your intentions. You will receive many graces if you come.
Please forward to anyone who may be interested or in need of attending. Thank you.
God Bless,
Tara
Dear Grace Fans,
First of all, thank you for increase in prayers for Grace and please don’t stop yet! This winter has been a long one for Grace and my family. Her recent hospitalization yielded some interesting finds but not a whole lot of what to do for her information. In viewing her brain activity, it was observed that every time Grace moves, her movements (even slight) causes immediate electrical activity in the brain- like an epileptic discharge. These continuous discharges seem to “back up” in Grace’s brain leading to a full out overload and an explosion of screaming, torment and misery. This cycle does not occur in “normal” brains nor with most girls with Rett Syndrome. It is unique to Grace.
Grace has always had unusual physical strength and ability for a girl with her diagnosis. It is because of this strength and ability that she suffers. Her brain is not capable of “driving” her body, therefore, sadly, her body drives her brain and the process for Grace is exhausting, painful and perpetual.
What do we do about it? Well, a cure would be nice but in the meantime, we are continuing to work to understand how we can introduce new meds, change her life and manage her days better in order for her to be comfortable. This is no small task and it’s been 4-1/2 years of searching for a way to help her but we are not giving up.
Speaking of a cure… It is still reachable. Although there is no Strollathon this year (thank God!!), the Race for Grace is still an open fund and desperately in need of donations. Research is continuing and it is aggressive. Rett specialists all over, including Grace’s doctor have conviction that it’s not a matter of IF the cure will be found, it’s a matter of WHEN.
On Sunday, May 15th, the Hopkinton Police Department and Ashaway Fire Department is hosting their 5th annual Race for Grace Softball Game at Dow Field on Rt. 3 in Hope Valley, RI. There is a steak fry to follow at the fire station at 2 pm. This is all an effort to raise funds and awareness for Grace. It is really one of the only Race for Grace fundraisers going on at this time. In lieu of attending the strollathon this year, I am asking that you consider attending the game/steak fry or at least donating if at all possible to the Race for Grace.
Also, the eve of the “would be” Race for Grace this year, on May 27th, there will be a live, luminary (candle lit) Rosary at 8pm in the same parking lot of the Race for Grace. This event is not a fund-raiser, but a true faith raiser and it is called: “grace for Grace”.
I hope that this email finds you well and feeling blessed.
Please continue to keep Grace in your thoughts and prayers as she battles through each day.
Peace,
Tara
Dear Friends of Grace,
Grace needs your prayers! I have not written for such a long time because there really has been no updates other than continued, progressive suffering for Grace in the form of seizures, neurological distress and general misery. This course of Rett Syndrome has proven to be a unique one for us to understand and also for specialists in the field of Rett Syndrome.
One thing is clear: “She suffers and suffers MUCH” ~ this is a quote from Grace’s dedicated and beautiful doctor, Aleksandra Djukic, at Montefiore Hospital in New York who has entered the life and suffering of Grace and has witnessed it with her own eyes.
As my family attempts to immerse ourselves into Holy Week and contemplate the suffering and death of Christ, I have come to understand more deeply the merits of suffering and the saving graces that pour forth from Grace’s suffering. As Christ in the garden, hours before his time of suffering, asked: “My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as You will” and so I am moved once again to ask God to take away Grace’s suffering and I would like your help. I know this list encompasses people of all faiths and/or non-faiths, and I understand this is a very Catholic request, so regardless of your faith or foundation, please hold Grace deep in prayer in your own way most especially in the next 9 days so that collectively, we are all asking God to have mercy on his little Grace. Grace is not carved out for Catholics. She is a little girl here for everyone and I’ve seen her touch all kinds of hearts, regardless of religious affiliation.
Beginning on Good Friday, April 22, I ask that you join me and my family and friends in collectively praying for Grace in this way…the Divine Mercy Chaplet http://thedivinemercy.org/message/devotions/praythechaplet.php for 9 days (ideally at 3pm each day), followed by the prayer for a miracle for Grace through the intercession of Pope John Paul II. The Novena will end on May 1st, which is a very special day in the church. Not only is it Mercy Sunday, but it is also the first day of May, the month devoted to Mary along with the Feast of St. Joseph (different from St. Joseph’s day in March) and to top it off, it is the beatification of Pope John Paul ll.
Beatification is the first step to becoming a saint. In order for Pope John Paul II to become a saint, he will need a significant miracle attached to him. Hundreds of Grace’s prayer cards have been distributed all over and yes, her photo is beautiful, but the prayer on the back is what I need people to focus on so Grace can be blessed with peace. She is going to be hospitalized again next week, so there is no better time to pray for her while doctors struggle to unlock the mystery to her suffering. Next Sunday, Mercy Sunday, May 1st will be a powerful day to ask for favors from God and in addition to your own intentions and sufferings, I ask that you please consider doing this for Grace. There is nothing else we can do for her at this time but pray.
She has given and continues to give as much of her little spirit to all who come to her physically and spiritually. There are many of you who have never actually met Grace, but she has entered your hearts in a special way and has promoted prayer and healing of hearts in so many people.
Grace has dramatically changed my life and increased my faith and understanding of the mysteries of God’s ways. She has brought me to new levels of strength, acceptance and total trust in God’s providence and mercy. I have no doubt that Grace is united to God in her life and in her suffering. I am given the opportunity to witness and learn of the direct impact that Grace has had on so many souls, near and far.
There is a reason for Grace’s suffering. I have no doubt about that. Perhaps bringing you all together in deep prayer is part of her journey. I hope that you will forward this to ANYONE who will join us in our prayer for a miracle. I know there are so many people who will be moved to do this for Grace.
In case you cannot read the prayer on the back of her card, I will include it below….
O Blessed Trinity, we thank You for having
graced the Church with Pope John Paul ll and for allowing
the tenderness of Your Fatherly care, the glory of
the Cross of Christ, and the splendor of the Spirit of
love, to shine through him. Trusting fully in Your
infinite mercy and in the maternal intercession of
Mary, he has given us a living image of Jesus the
Good Shepherd, and has shown us that holiness is
the necessary measure of ordinary Christian life and
is the way of achieving eternal communion with
You. Grant us, by his intercession, and according to
Your will, the graces we implore (a miracle for Grace),
hoping that he will soon be numbered among Your saints.
Amen
God Bless you this Easter Season. May your hearts and homes find God’s peace in all circumstances.
I cannot thank you enough for your faith and support and all you have done for Grace in word, deed and prayers over the last 4-1/2 years. God is listening.
In Faith,
Tara
Dear Friends of Grace,
I hope everyone had a great Thanksgiving. I could say our Thanksgiving was great but I’d be lying. Every day here is gently laced with sadness as we all work hard to cope with Grace’s cycles of misery. Every day she requires 110% of me and David and we are willing to give it for the rest of our days or her days, but unfortunately, even our 110% isn’t enough for her. Thanksgiving wasn’t awful for us, but I guess being a Holiday, I woke up expecting that somehow Grace would be happy or calm but for over 4 years, that’s not been the case. I don’t know why I continue to expect it to happen with each new day. I can only assume it’s not foolishness, but faith that leads me to believe that one of these days God will look down and decide, “Enough is enough” and give her peace. I am writing with a heavy request for prayers for Grace.
I am not sure anymore what specifically we should all be praying for…a cure, a miracle, stability, hope, strength, grace, etc. At the wise age of four, my youngest daughter, Lily asked my husband this morning if he thought Grace would be happier in heaven. He quietly, said “Yes”. Then she went on to say maybe we should ask God to come and take her to heaven. Then Sam, oldest (almost 12 yrs.) said, “I couldn’t pray for that.”
I believe that our continued prayer for Grace MUST be for peace. I am writing to ask you for prayers for peace for her suffering little soul and body. I also realize that we need to be open to accepting whatever form that peace comes in. Whether she stabilizes, falls deeper into the disease, experiences a cure, or God decides that the only peace for Grace is in heaven, then I am ready to accept whatever God wants for her. I have gone to Providence, Boston, New York with Grace seeking help for her. I have connected to people all over the world. I have followed every lead, every drug, every treatment….acupuncture, reflexology, seizure management, morphine, blood tests, bone scans, brain scans, etc. etc. The answer is not here for her. I have stopped seeking medical treatment for her. If something comes up, I’ll try anything, but it’s been a long hard search with no answers.
Please join me in prayers for peace for Grace. Please, until you hear otherwise, don’t stop praying for her. My lack of communicating isn’t an indicator that things are going well for her. She has received her First Communion and has been Confirmed. I know God is close to her and she continues to receive the Eucharist every Sunday.
Many people still try to encourage me to reconsider holding the Race for Grace Strollathon. As a friend commented to me the other day, “You race for Grace every day” and she’s right. I do. I ask that you all join me in continuing to race for Grace, but not in funds anymore. I need to know that you will pray for Grace as often and deeply as possible. Please forward my plea for prayers to as many people as you can.
Thank you and God Bless.
-Tara
Grace is 6 today, Happy Birthday!
Love and Hugs from Everyone.
Why don’t you buy Grace a Birthday present? Please consider a donation…..
Donate at the International Rett Syndrome Foundation’s website (select Race for Grace RI as the Program Area)
or
Send check to (pay “Race for Grace”)
Race for Grace
34 Old Pine Road
Narragansett, RI 02882
Dear Race for Grace Supporters,
I feel like I have been underground for quite some time. Race for Grace plans have been at a bare bones minimal this year. Life has taken over. Work, house, kids, family have all taken precedence over anything extracurricular and unfortunately Race for Grace has landed in that category. I am writing today to remind you of the Race for Grace on May 29th and call out with a desperate plea for help to make it a success. I am unable to do this on my own. This entire Race for Grace experience has always been a collective effort ~ combining supports great and small. This year, I ask that Race for Grace be YOURS. It isn’t the Reddingtons that are hosting it this year. It is all the Friends of Grace that have sustained the fundraising, faith-raising and inflated spirits for the past three years. As you know, this is the fourth and final Race for Grace and my lofty goals for promotion, fund-raising, letter writing and soliciting have fallen short this year.
This week, during spring vacation, I have had the bittersweet experience of spending a week alone with Grace for the first time ever. David and my four other children scooted down to Florida for a much needed break. Unfortunately, family vacations that include all of us, are not a possibility with Grace. She is too fragile to travel and we have had to recognize and act on the need to divide and conquer. This was the week that I truly experienced how silent Grace really is…how locked inside her mind she is. She began the week content and became progressively agitated as I once again began the frustrating and desperate process of diagnosing what is bothering her. Doses of strong pain meds is the last resort. She’s tormented by something and perpetually exhausted. After being up for less than 6 hours this morning, Grace had already fallen asleep 7 times by 1 pm. She wakes with a jolt and a pounding heart. She then burns most of her fading energy and falls back to sleep, often through fatigue, tears, and screams.
I woke up from sleep last night, alone in the house, listening to Grace struggling to cope with her tormented state with her breathless panic, knowing she was seeing something or hearing something that terrified her. Who knows what she experiences. As usual, there is no “fix” for her. I can’t tell her it’s going to be ok, because for her, the reality is…it’s not going to be ok. She is gripped by something greater than her body’s ability to fight back. I prayed for her and begged God to bring her peace and comfort. I don’t know how long it took for her to fall back to sleep, of if she ever did, but by morning, she looked like she had been through a war and she has. She continues to battle this war on her own, with the glimmer of hope that someday, maybe someday, that miracle we work and pray for through Race for Grace will be realized.
So, what do I ask of you at this time? We need cash donations galore, participants, auction items, raffle items and lots of motivation. If you are coming to the Race for Grace, please try to find as many people to sponsor you as possible. This is done by basically letting people know you are running/walking/strolling in the Race for Grace and ask people if they would be willing to sponsor your participation with a donation. We also need participants who can likewise find their own sponsors. Going back to the ‘10 for 10’ from last year ~ if each of you asked 10 people to participate and those ten people each found 10 sponsors…that’s a lot of research money that could lead to ‘saving Grace’ and many other girls suffering from Rett Syndrome.
If you cannot attend, please consider finding sponsors anyway and send in those donations via mail or online. If you are not in Rhode Island or even in the US, please find a way to rally support for Race for Grace by sending out letters and emails to as many friends and family as possible. More than any other way you can help, we need to continue to storm heaven with prayers for Grace so that she finds peace and is released from her torment. Grace needs you more than ever. Please let her inspire you to work harder than ever this year to make it a great event where we can gather together under one unifying element: GRACE.
It has not been easy to ask anything of any of you over the past years as I’ve prepared and fought hard to make Race for Grace a success. I can only humbly thank you for making it what it has become and recognizing the value and importance of coming together to hope, love and support such a worthy cause. Race for Grace is five weeks from today. We could see that as either a little time to prepare or plenty of time to gather momentum, support and donations from all over the place.
Please forward this to as many people as possible as it is the final plea from Grace and the Reddingtons to make Race for Grace a beautiful and successful event one last time.
God bless and peace in your families,
Dear Friends of Grace,
I know my letters have gotten farther and fewer between, but that’s not for lack of things happening around here. Grace is just emerging from another rough patch. It seems that she always leaves something behind every time she goes through a difficult phase. She spent over a week with her silent tears and perpetual sadness and when she finally “came back”, it seemed she was a little further away from us. It’s hard to explain, but there are more periods of vacancy in her eyes these days and it’s hard to know if it’s permanent.
I just returned one week ago from my own vacancy. I traveled to Ireland and from there, traveled to Bosnia/Croatia to Medjugorje, a small village where miracles are reported to occur-miracles of physical and spiritual healings. My sole purpose for going was to pray as hard as I could for Grace. One week before I left on my journey, I was home folding laundry.
It was another frustrating Saturday for me where I was once again home for the weekend, catching up on laundry, kids, cleaning and Grace after working all week. Grace was not having a good day, which unfortunately has been the norm lately. My mother came over to support me in my quiet misery and gently commented that I don’t seem to spend enough time praying anymore. I snapped back at her, “Then HE better make time for me to pray because I have NONE!” (Accusingly pointing my finger toward heaven). A few hours later, I got a phone call from a friend inviting me to join her on a pilgrimage to Medjugorje and that she would be leaving in 6 days. For those of you who have never heard of Medjugorje, it is most similar to Fatima, Portugal where the Virgin Mary appeared to three children.
I originally had plans to spend vacation week with my children in New Hampshire, but after hearing I had an opportunity to go on a trip and pray for Grace, they gave me their blessing. David was supportive from the moment I told him I was thinking about going. He said he would make it work even though he was scheduled to work that week because it was a coveted school vacation week and he is never able to get that week off. I felt that God had personally invited me on this pilgrimage and I couldn’t refuse the invitation. The next day, my mother came over to babysit so I could go to church and she handed me a prayer card that she had meant to give me the day before. It was a picture of the Virgin Mary and it said, “Medjugorje”. I booked my ticket. I was set to leave in five days.
David went off to work that Sunday night and called me a couple of hours later telling me that miraculously, the week had opened up and he would be able to take a vacation. Another blessing and another confirmation that it was meant to be.
During the next few days, I had to get to Boston and apply for an emergency passport. Getting through the traffic and the lines at the passport office was another miracle. I said goodbye to my children Thursday night and left for work early Friday morning with my suitcase in the car. I went to Logan Airport in Boston straight after work and by 3 o’clock, I was on my way.
Arriving in Medjugorje with a hope-filled heart and a suitcase full of prayer requests from friends and family, I was overwhelmed. I had never left my children or even David before. I was a strange feeling but I had no doubts that I was where I needed to be. During the week, we visited the local church, an orphanage, a recovery community for boys with addiction, and climbed “Cross Mountain” and Apparition Hill where the Virgin Mary has appeared to 6 local visionaries. During the week we were completely emersed in the peaceful pulse of this war-torn community of devoted and prayerful people.
There was such an incredible sense of holiness and peace in the places I visited as I realized how many other millions of pilgrims stood where I stood for all their million different reasons and brought their despairs, hopes and faith to these same blessed grounds. Wherever I went, I brought Grace with me. Whenever I prayed, I prayed for her. At one point, as I stood on the Apparition Hill, and begged for help and healing for Grace, I realized with such certainty that it wasn’t Grace that needed the healing after all. It was me. I was there for my own healing of a different kind.
Well, I received it. It was as if the tank of fumes I was running on suddenly got filled up. I felt a pouring of grace into my soul and deep inside, there settled a deep sense of peace, renewal and clarity.
As much as Grace’s body is often in a tormented state, her soul is not tormented. But so many of us do have tormented souls. We are tormented by our worries of tomorrow, our regrets of yesterday, our “what if’s” and “should have’s.” All too often, we focus on what we don’t have or we get stressed over the situations we find ourselves in, instead of accepting our circumstances with faith and confidence. If there’s one thing Grace does, as you all know by now, it’s live in the moment.
I realized that I must never stop being thankful for Grace and the gifts that she has given me and given so many people. It is because of Grace and her suffering that I have come to connect so strongly with God and with so many of you, her faithful friends. Some day in heaven, Grace’s broken body will be restored and more perfectly matched to her beautiful soul. My faith assures me of that. I know her healing will come in God’s time. For now, despite her tears, my spirit feels very strong.
In church this morning, Monsignor Halloran talked about coming in on the Block Island Ferry years ago before digital technology. He recalled that in times of heavy fog, the captain would shut down the motors so he could hear the fog horn and get his bearings. I was so blessed to be able to go to Medjugorje and shut down my motors. I heard God’s call to me loud and clear and I have now turned back on my motors and maintained my bearings. Now that I am back from my incredible journey, I have to stay on course and continue to follow the messages from my pilgrimage…work, prayer, service, love and gratitude for everything we have at all times…even our sufferings which strengthen us.
I will end with reminding you that Race for Grace Fourth and Final is set for May 29th same time and place as usual ~ 10 am, St. Veronica Chapel, Narragansett. I haven’t done a THING for it yet, but my faith reminds me, it will all get done. Hoping for the biggest and best turnout EVER!! I ask for now only for your prayers that the event will be a huge success and Grace will have another opportunity to reel in more souls into her circle of love.
Peace,
Tara
Grace and Tara featured in the International Rett Syndrome Foundation Annual Appeal
Dear Grace Fans,
I have been out of touch for so long, I don’t know where to begin. We are coming off the heels of a very special Christmas for the Reddingtons. I pray that you all have a blessed New Year and I hope that my letter finds all of you in a state of peace and faith that despite the heartaches, trials and stresses of life, there is a great plan for us all. No doubt, there are times in life where it is hard to imagine a “great plan” evolving while we are drowning in sadness and chaos but I have come to believe it and feel it and trust it. I hope that you too can grow in this way and perhaps Grace and her life could be a small part of your journey.
I am still working full time. David is also working full time at night. This has been the busiest time I’ve ever experienced in my life yet I have a peace deep down that sustains me through the daily hustle. The peace comes from the trust in the greater plan and I have confidence that my family is journeying along the road that will lead us to that place in time where we will have peace not just in our hearts but also in our lives.
Our home has been permanently and beautifully Grace-proofed thanks to a tremendous secret fund- raiser organized without my knowledge and despite my forbidding threats to not have one. The fund raiser was called “A Safer Place for Grace” and some incredibly dedicated friends and HUGE fans of Grace were able to make our dream for a safer home a reality. We have struggled with a little girl who has incredible mobility and hand use but no cognitive control over her body. Living with Grace has been a very stressful and constant source of risk and danger for her and our family.
We are now living in a home that allows Grace to be independent and safe and I no longer have to wish away her mobility because I can’t manage it! A grant from the state I had been working on fell through in the spring and our hopes died along with it. David and I looked up and said, “Ok, God, if we have to stay in this house like this….” and that is when He took over and things started happening without our knowledge.
The happy ending is that we cleared and moved out of our house on November 30th and Woodmeister Master Builders (who donated $30,000 of the project cost) came in and completely changed our home from chaos and cramped to clutter-free, safe and graceful. It was absolutely the BEST Christmas gift for my whole family and especially Grace who can now live freely and safely in her home. THANK YOU to everyone involved!!! God always takes care of the Reddingtons.
Race for Grace Strollathon 2010 will be the fourth and finale! There is not much pie left in the slices of my life anymore. I cannot devote time that I don’t have so I will need your help to create the best, biggest and most successful Race for Grace EVER!! We have raised $362,000 in 3 years. I have no doubt that together, we can sail past $500,000. As long as Grace has Rett Syndrome, I will Race for Grace in my everyday life and the many little mini-events that happen all year long. The Race for Grace is not ending, but the big Strollathon event will be the last one. My children are very disappointed but there isn’t any possible way for me to keep it going without taking away important time from my family. It is set for Saturday May 29th, 2010. I hope that you will come, bring as many friends as you possibly can and help me and Grace get the word out one last time.
Grace continues to have her good days and bad days. She is in school full time and continuing to touch hearts and change lives whenever she encounters people. I wanted to be able to share some lessons I’ve learned from Grace in time for the New Year that is upon us. For 2010, I hope that you can incorporate some of Grace’s best advice into your own lives. She lives simply and experiences feelings in their purest form. When she’s happy, she’s happy. When she’s sad, she’s sad. Grace doesn’t incorporate bitterness, resentment, guilt, regret, or other complicated emotions into her experiences. She lives in part, the way we should all live…for the moment. As her mother and her voice, I once again have tried my hardest to get her message out to you. I hope you are inspired by her ways…
Grace’s Simple and Profound Lessons:
- Look directly into the eyes of everyone who comes before you
- Find something to love in everyone (yes, everyone!!)
- Cry when you are sad or in pain
- Laugh when you feel silly and enjoy a good giggle
- Scream when you are mad
- Don’t hold onto old hurts (either from years ago or moments ago)
- Don’t worry about the “what ifs”
- Be willing to approach new people
- Don’t be afraid of people who are different
- Everybody needs to be loved
- Eat slowly Savor good tastes (smack your lips if it’s really good)
- Smile when you snuggle in your cozy bed
- Be thankful for simple moments TV does nothing for you
- Fall asleep in someone’s arms
- Do a chocolate dance when you eat it
- Smile when you wake up
- Laugh out loud
- Hide and seek is fun (no matter how old you are)
- Touch the faces of those you love
- See the angels around you
- Remember that no matter how much it hurts inside or out, God is with you always.
Merry Christmas and Happy New Year!!
Love,
Tara